Sunday, February 23, 2014

Everyone's home...


I last left you at Valentine's Eve.  For the past two years, I have been so overwhelmed at Valentine's time that I have not been able to do our annual tradition of a Valentine's breakfast with little valentine surprises at each person's plate, so Hannah surprised me both years by taking care of everything from surprises to decorations to making the breakfast.  This year, I did not want her to have to do it again.



To my surprise something even better happened.  I hope it will continue and expand.  
I decorated and put my things on the table late that night, and by morning, others had added their Valentines!  Canaan and Candice and Hannah and Daddy all added their contributions to the table.  Next year, I'll encourage the little ones to take part in this way as well.  



Hannah made hand cut Valentines for each person.  Here is mine, with a little cut out of Ruby on the top.



And here is Levi's, with a chicken!  :-)






Here is Micaiah upon hearing that he is about to come home.

He had been promised to come home on Thursday after our dialysis training.  But he developed a last minute infection that kept us from keeping that promise.



Saturday afternoon, we were cleared to bring him home at last, after ten weeks in the hospital.



He was very excited.  And we had tons of stuff to bring home with us from his long stay.



Meeting our little kischka, Ruby.



The whole family together for dinner.



Micaiah is a very happy boy.   He is getting excellent round the clock care, and from all we can tell is feeling wonderful.  He is glad to be home.  We are beginning the next step: the long process of unraveling all of his further needs since his immediate medical needs have been addressed.  

On Friday we had a very good meeting with some of the school specialists from our county school board.  They came out to the house to meet Micaiah and to try to ascertain what the best schooling option for him might be.  He will begin undergoing some evaluations.  I had assumed the choices were either the special needs school here that Laz goes to, or a special needs class at the Newcomers' School that Levi goes to.  We all agreed that he did not seem to be a candidate for either, but we learned that there is another option which is a Life Skills school that is offered here.   There he would learn basic life skills with the goal of becoming independent in a group home situation some day.  If nothing else, each skill that he can learn to do on his own, is one less skill that has to be done for him.  Right now he is basically receiving intense round the clock nursing care as there is very little he can do for himself.   It involves a tremendous amount of time, equipment, supplies, and energy on our part but he is learning more each day and becoming stronger.  He is happy and comfortable right now, and for that, we are glad.  

We are figuring things out a little at a time.  The calendar for next month is filled with appointments every few days:  orthopedic surgeon, urologist, neurosurgeon, nephrologist, wheelchair clinic, physical therapy, pediatrician, dialysis clinic, gastroenterologist...

He is learning some English.   He does not seem to be as motivated to learn English as Levi is.  He prefers to use Ukrainian words for things and we continue to give him the English translation.  When Levi learns an English word, he tends to want to use it, even when we ask him to remind us what the Ukrainian word is.  He'll correct us by saying, "No, no..." and then the English word. :-)  

There is much we are learning about both boys each day.  It is difficult to describe things since they continue to change as they learn and adjust and we learn and adjust.  I hesitate to make any judgments on what they are capable of, or what the future holds as it is just too unknown right now.  

I have begun to write this blog post several times, and always end up starting over again.  I want to share honestly and openly and yet I do not want to say more than needs to be said.  I have many thoughts about it all.  We have been challenged in ways we've never dreamed of, and with questions we never imagined we would ever have to ask ourselves.  The decisions we have had to make are about things that never occurred to us before.  We long for and pray for wisdom and discernment.  To know what is right to do and pray for strength to do it is only the beginning.  But when you are struggling to even know what is the right thing to do, it is all the more challenging. 



Here Micaiah has been set on the floor to play Tinker Toys with the other kids.  He picked up a few pieces but wasn't really interested.   He can do some simple puzzles, and lacing cards when directed to, but is  not self motivated to engage in activities.  He is happiest when he is sitting and listening to his Ukrainian music, and following me around or just sitting close to wherever I am.  With adults, he shows a desire to be social, but he does not enjoy interacting with other children despite their efforts to include and involve him.  Even when in the same room with them, he does not watch them play or seem to really notice them at all. 



 Here is the current list on the side of our fridge of all our doctors and specialists....



Here are his dialysis and medical supplies stacked up in his room.  There will always be this amount of inventory or more.  



His bed.  His dialysis machine is on the side.  The cabinets at the foot of his bed are full of medical supplies: catheters, creams, dressings, and equipment....



Down in the kitchen we keep the various prescription medications he takes all day long.  These are not temporary meds; they are indefinite.  





Levi's chickens!
Everyone enjoys Levi's chickens.  These silkie chickens are so gentle and so hardy.  They are such a great breed.  All the kids enjoy them.
































A beautiful, sunny day.  Could it be we just had several snow days?  The weather is teasing us, making us think winter is over.  But we all enjoyed getting out in the sunshine.






























Family picture, at last.




My kitty makes me happy.



I am posting this on a Sunday.  Tomorrow Silas has spinal surgery to expand the titanium rib/rods in his back.  If all goes well, we should be able to go home tomorrow night.  Your prayers are greatly appreciated.


...




....

Thursday, February 13, 2014

Valentine's Eve update

Can you say stir crazy?  Micaiah has been in the hospital for two months now.  While he is feeling better than he probably ever has, he does understand that he is not home.  I was worried that he thought he just went from one institution to another, but a doctor from another floor came in.  She introduced herself and told us that she speaks Russian and has been visiting Micaiah.  In fact, her 13 year old son has been talking to him on the phone.  We were thrilled to have another opportunity to try to communicate more effectively with him.  She chatted with him and told us that he does understand that he is in the hospital and is waiting to go home for reals.  We explained he would be coming home at last on Thursday.  

Despite the long and complicated process, we finally began dialysis training on Monday.  It would take to long to explain everything, and how mixed up it all was.  But the bottom line is that we accomplished five days of training in three days, and we had an awesome trainer.  It was a little difficult doing it in-patient in the hospital (as they told us we had to do) and we did not end up doing much of anything that needed Micaiah to be there.  In fact, he was quite the distraction while we tried to learn.  But we got it done and passed both the written exam and the physical test.  It is a lot more complicated than I imagined.  There is so much to remember, and so much equipment involved.  

So Art and I were there for three days, and each day Micaiah repeatedly checked with us how many days were left until he came home.  He understood and he was ready!  Until the day before his release.  We were told that some infection was found and to be safe they had to do a 48 hour culture to see what sort of infection it was.  He cannot be released until after the 48 hours and they know whether he need IV antibiotics or can go home on oral ones.  This is disappointing, especially for him.  It was very difficult to try to explain to him why he couldn't come home when we said he could.  I feel bad because he has been told so many times that it will be "soon".  But then again, so have we.  

So, we should know tomorrow about the infection.  In the meantime, an unprecedented snowstorm has hit our area.  We have not had a dump of snow like this since we moved here, and it has slowed everything down to a crawl, complicating even Micaiah's homecoming.  His dialysis supplies have not been able to be delivered because of the weather.  So, we all wait.  


In the mean time....



 Hannah gets a hair cut every six months or so, whether she needs it or not. 



 So here's the before...






And here's the after.  Wow wow wow!!

 


 Eden washing dishes.




 And now some snow pictures.









Waffles.  He just loves the snow.  He's a big waffley happy puppy.

 







I knew Laz was really excited about the snow, but I also knew he wouldn't like it if he got snow up his sleeves or down his pants.  So, I set him on a chair to watch the others, and play with the snow, and later took him out on the wagon.  He loved it.




These silkie chickens are pretty amazing.  They put up with a lot of cold and do very well.  All the same, I feel sorry for them and bring out a hot water bottle on cold days and nights like this.  They huddle around it.  They are really sweet chickens.  





















Now interestingly, Levi was not very impressed with the snow.  He did not want to go out and play with the others.  And had no interest in it at all until I chased him in the house with a snowball and threw it at him, which he thought was hilarious.  Then he agreed to come outside for a little bit.  He was not out for long, but he was all Levi while he was out.  



Everyone says what a great smile Laz has.  I'd have to agree!





 The happy little family.




 Of course Canaan has to climb on the roof of the shed.



 And then jump off....











 Hannah and Canaan and Candice took the four on a walk to the lake.




 Candice and Canaan.



 Canaan really likes Candice.  I don't know if anyone has ever looked at me like that.  It's heartwarming.



 Warming up by the fire after the walk.  A warm fire, and a warm kitten.




 Too cute...  I want to come back in my next life as a kitten as loved as Rhubarb. 




And a great way to end a big snow day?  A bonfire in the backyard in your pajamas.  And tomorrow is another snow day, and then the weekend.  What will the next few days bring?   Check back and see!



..